Tuesday, December 01, 2009

Over the last four years I've received messages from readers telling me how we're doing a "beautiful job" helping Joseph manage his diabetes and that I'm an "amazing" mom.

Well at the beginning of last month, I felt about as far from amazing as any mom could get — and even now, I'm still a little shaky.

You see, Joseph was sneaking food, treats mostly — but worse, he wasn't bolusing for them.

When I first found out that he wasn't being truthful with us, it hurt.

A lot.

But the not bolusing, well that just froze me in my tracks.

For several days and nights after I realized what was going on, I couldn't think of anything but what this might do to him in the long run — not just the effects of the high blood sugars, but the habit he seemed to be falling into.

And desperately, I wondered why?

We'd always worked together on this stuff, but now...

It started with small things, a candy wrapper in his room, a number of unexpected high blood sugars... coming to a head just after Halloween — when we left a bright red plastic bag filled with nearly 4 lbs of candy sitting on our kitchen counter.

(Stupid to have left this out, I know.)

Within a few days the bag weighed considerably less.

I discovered this after yet another argument with Joseph about him having eaten a snack without bolusing — this time, a chocolate chip granola bar.

His blood sugar was 404.

I asked him why he hadn't bolused.

"I don't know," he said turning away from me.

I got upset, choking out that I didn't want him to hurt himself. That if he gets in the habit of eating without insulin, he could set himself up for other health problems — serious health problems...

And when it seemed like he was tuning me out, "... some people have lost their sight because they ignored their diabetes, because they didn't take care of themselves."

Immediately, I wanted to take it back.

"Wait, Bud- "

But he was already halfway up the stairs, heading to his room.

Shaken, I returned to the kitchen to start making dinner. To calm down. That's when I noticed that red bag on the counter next to the stove, and — looking at it closely for the first time in a few days — saw the empty wrappers sticking out of the top of it. I opened it wider, and there were piles of them.

Oh no.

"Joseph," I called up the stairs, "was that granola bar the only thing you ate?"

No answer.

"Joseph— please, come downstairs."

A moment later he walked slowly into the kitchen wearing an inscrutable expression, then his eyes traveled to the red bag on the counter.

"No, I had a mini Snickers too."

"But why, Bud? It can't feel good to be high... if you eat something, please, you have to bolus for it."

"Yeah, I know." That's all he said.

The next afternoon, when he arrived home from school, I asked Joseph to sit down with me on the couch in our lower level. To talk.

"What's really going on, Bud?"

"I don't know... it's just hard having diabetes... I mean, no one else has to think about this stuff, they just eat what they want when they want. You know what B told me on the phone last night? He has his Halloween bag under his bed, his parents have no idea it's there... "

"But Honey- "

" ... and when I see your face when I have a high blood sugar, I just feel bad."

"Bud, I- I'm sorry. I don't know what to say... If I look upset when you're high, it's not you... I'm not angry or disappointed in you, I'm just worried about the high. I'm sorry that I made you feel like that. No matter what we do, there are always gonna be highs, lows — we can't make this perfect. Nothing is perfect."

"I know, I just hate having this," he said, his voice catching — and then he looked down at his hands for a few seconds before going on, "and please Mom, please don't say I'm gonna go blind."

Looking up at me, eyes wet with tears, he suddenly looked very young.

I put my arms around him— my own tears dripping down onto his shoulder as I held him close.

"I'm sorry, Bud — that was a horrible thing to say. I was so desperate to get through to you. I don't want to scare you, I just want you to take care of yourself. Listen, we are going to figure this out, I promise."

For a moment, we just sat there and said nothing.

Finally, we both stood up. "Hey, I'm hungry," he said. Then, without missing a beat, he pulled out his meter and pricked a heavily calloused finger.

"189... I can wait until dinner."

"No, Bud - go eat something now if you're hungry, just bolus for it."

"Okay," he said, "I'll have a banana," and he ran up the stairs taking two at a time.

Later, with the rich smell of ratatouille filling the kitchen, I called upstairs to the kids, telling them dinner will be ready soon, giving them the 10-minute warning. Evan clomped heavily down the stairs, shuffled into the kitchen and grudgingly agreed to try the ratatouille, but insisted that she "hates" polenta.

Shaking my head, I handed her some utensils to put on the table.

"Bud, can you do a check?" I said to Joseph, while pulling four white plates out of the cupboard.

He's 249.

"Hey, did you bolus for that banana?"

"Yes," he said, "two units." Then he filled several glasses with lime fizzy water, placed them on the table, and headed back up to his room.

A few minutes later, while standing next to Ryan at the stove, I noticed something on the floor in a corner of the kitchen— a large, empty, silver can.

And immediately I knew. Because Ryan's mom had called me earlier that day to ask if she should bring more cookies when she comes down in a couple of weeks. I'd checked that can and told her "yes" — because there was one cookie left.

I walked upstairs, knocked on Joseph's bedroom door and just asked him.

"Yeah, I had one," he said without looking up.

"When you had the banana?"

"Yeah."

"And you didn't bolus for it."

"No, I didn't," he said quietly.

"But, why?" I asked, desperate for an answer.

"Because I knew you wouldn't want me to have one. That you'd rather I made a healthy choice."

"Bud, even if you didn't have diabetes, I'd encourage you to eat healthy — that's what Mom's do — it's the not bolusing that really scares me."

Then I turned around, and walked back down the stairs, a massive lump sticking at the back of my throat.

I don't understand — he can have treats . . . when we have dessert, he has dessert; when he wants to go get ice cream with his friends, I let him...

His last A1c was 8.7

It's been creeping up again, thanks to many unexplained highs— highs I thought were due to the hormones of a growing teen (and maybe that's at least partly true), but now I don't know.

Joseph and I have always been able to talk about things, about almost anything, really. But lately, we've been arguing a ton.

I don't know what to do.

********************************************************

I wrote much of this post about three weeks ago — since then, I've done a good deal of crying and a lot of thinking. I've also gone online and — among other things — read this thread on tudiabetes.org. I discovered that what we've been going through is fairly common.

Just knowing we weren't alone gave me strength — and made me believe that we could get through this.

It took a lot more talking — and far more listening — before it finally hit me:

Joseph's sneaking food and not bolusing for it may have had less to do with deprivation than it did with him needing more independence.

(Yes, I realize to some this may sound counterintuitive, but hear me out.)

I honestly believe that by making choices he knew I wouldn't like, by not bolusing, he was struggling with us — with me — to "take the wheel." To show us that if we continue to drive this thing and not trust him to do it, we are going to crash.

He's going to crash.

(Does this make any sense?)

Joseph knows more about nutrition than most people and eats healthy food at home; he knows how to count carbs and how to bolus for food better than we do.

He has a good foundation.

Now, while we've let him eat like a kid and, more recently, like a teenager, he's always asked or sent a text to one of us when he's going to eat a snack, with carbs and a bolus calculation — and for a long while now, 99.9% of the time we text or say "go for it."

And I think it's that routine that needed to change.

Sooo...

Two weeks ago, I went up to his room, sat down next to him on the edge of his bed and took a deep breath.

"Bud, how would you feel about eating snacks and not calling or texting me about them? About coming home from school and getting something out of the pantry without checking with me or Dad first?

Still checking your blood sugar and bolusing, but not checking with us?"

His face lights up.

"Really?"

"Yes, really. Bud, I've been stupid. I should have done this a long time ago. You know, when I was your age I used to eat these things called "Hot Fries"... Andy Capp's Hot Fries. Never asked my mom, I just walked down to Prevites Market, bought a bag and ate them. And I loved Nestle Crunch bars, too. Now don't get me wrong," I add quickly, "I didn't sit down and eat masses of them, but I ate treats when I was a teenager. And I didn't ask for anyone's permission to do it... I want you to be able to do that too."

I'm about to say more, but I can't — because Joseph has me in a bear hug.

31 comments:

Funny, we got a call last night about a study which aims to evaluate two different education/support programs to help kids with diabetes through the transition into teen years. I think I'll print this post and give it to the researchers :)

wow, looks like you hit the nail on the head. I think you are right that Joseph just didn't want to have to ask permission every time he eats a snack...I mean, who wants to do that, even if the person you ask is always going to say yes?

I didn't even develop D until I was almost a teenager "twice over" - 36 - and I still can get frustrated enough every once in a while to say to hell with it, I'm not testing or not bolusing or just taking a completely random bolus because I just don't want to have to think... It's a tough road to follow, and there are going to be bumps and potholes and flat tires sometimes...

This is so very common among teens and it is a normal phase to be going through . I remember when my son went through this and this is definately hard on us more so than them , I dont think it is about denying them treats or sweets it is about what is going on in their brain . LOL !!!

Sandra~I think you are STILL doing an amazing job...even if you think you're not.

You've done the right thing with letting him do things on his own. We do that with Kacey and shes only 9. She packs her own lunch...writes the carbs on her baggies...counts everything and boluses her own at lunch. She gets a snack when she wants and she gives herself the insulin for it. She has her independence and I think thats what makes our life with diabetes much easier and it also makes her more responsible.

We gave Kacey the chance to prove she could do it and I checked her pump daily. She was doing so well that I ended up just checking weekly :) Another thing that helped us...the snacks we bought were in individual packs or we put them in baggies and wrote on the bags. Whenever she wants a snack, she knows the carbs and doesn't have to try and count and figure them out. Also, I made sure none of the snacks were over 20 carbs. This way, if she did forget to bolus, it wouldn't shoot her up too high. I also got things like peanuts and sunflower seeds that were crunchy snacks and low carb. Hope those ideas help :)

Keep your chin up and you're STILL a great Mom and doing a wonderful job! (((HUGS)))

I think you're absolutely right about this (and hence I till think you're awesome!)

I went through a... rebellion, I guess I'd call it, when I was in my early teenage years. I didn't sneak food so much as completely stop bolusing for lunch. The real deception was that I would stop on the way home from school to squirt a few units out of my insulin pen so that it would look as though I had. To this day, I can't fully articulate why I did it. Perversely, it was at least partly about being "in control" as I felt like had more control if I was manipulating the situation my way, rather than doing what my parents wanted me, or told me, to do. I do know that what made me stop was the way my parents handled it. They didn't take away my independence, but instead nudged me towards my own realisation about what I was doing and helped me regain true control.

I think it's completely normal for adolescents with diabetes to go through this, often more than once. But the support of our parents, we make it through.

The fact that the problem arose is not a measure of how well you are or are not doing, it's all about how you handle it.

You know, after I wrote this out, I almost didn't post it-- but then I thought about how much better, how less afraid I felt when I discovered that other families were going through the same kind of thing.

So yes, feel free to share our experience.

Val -

Thanks.

We'll both take those hugs. :-)

phonelady -

I agree. :-)

Just wish I could have seen that right away.

Jill -

Thank you.

Sounds like you have one incredible girl!

Okay, George -

I read your comment just before I left work this afternoon, and you brought me to tears.

Jackie -

Thanks. :-)

Caro -

Some of the things I'd read online made it sound like we needed to step in, to take more control of Joseph's diabetes (and in some situations, that might be right course).

Deciding to go the other way, to give Joseph more freedom was kind of scary.

Reading your comment makes me even more confident that we made the right call.

Scott -

Thank you :-)

So far, the talking has come much easier-- and Joseph seems much happier. We'll enjoy this now until the next rebellion, I guess. :-)

I have tears in my eyes reading your post. My 17 yo son has had Type 1 for 12 years. 6 weeks after he was diagnosed we went to diabetes family camp, and I remember the endo there saying that 25% compliance with their insulin regimen was average for teens. AVERAGE! I was stunned. This was back with MDI of R and NPH, pre humalog and pumps. All of our teens are striving for independence, but the one thing they can't have is independence from diabetes!! IT is so unfair for them. I applaud your choice of letting him figure out his own snacks etc. We've done that too.Thanks for your brutal honesty, and if he gives you a chance, hug your son for me : ) Then a big hug for you, D mom to D mom.

Sandra, The tears in my eyes are only a small part of the emotions I am feeling after reading your post. As a Dad of a T1 teen, I felt the emotions and reactions I would have, and could only pray that I would be able to handle the follow-up and the post discovery with the grace you demonstrated. And that doesn’t mean I think it wasn’t a struggle for you ;-) , I just know how hard it is to catch yourself and think through the big picture.

George’s comments are very true. And while I think you have evaluated the situation correctly and that your solution is going to work, I want you to know that George’s comments are true even if there is another round of problems. “It's takes a great mom to realize how to help and to sit down and talk to her child about it.”

Thanks for sharing your story: It helps me think through where my family is at, where we are heading, and how to emotionally prepare for the bumps.

From the moment I started this post I could see where it was heading and the tears started.

Just yesterday when I told Riley we needed to go home (from his grandmother's house after school) and change his needle he gave me a hard time about it. When I told him that if we didn't go on and change it his sugar might go up over 500 he looked at me and said "I don't care if my sugar goes over 500."

I won't go into details because I don't want to hijack your blog with my comment, but it upset me. Later, we talked about it and we had a conversation about it being OK to eat ice cream and stuff on occasion but not every day and how important his health is and so on and so on.

And, he's only 7. In the back of my mind all of I could think of is what in the world is it going to be like when he hits his teen years.

I think your post moved me to tears because I know that day is coming for Riley too and there is nothing I can do to stop it. And, I've been reading your blog for over 4 years now and have grown quite fond of Joseph. I, too, don't want to see anything bad happen to him.

(((big hug))) to you Sandra. And, if you get a chance please update us on how things are going.

Also, wanted to echo what everyone else has said already. I still think you're doing an awesome job.

Being a mom is a very hard job. When you throw diabetes in the mix I think it makes it that much harder. But, you handled this with the grace I have come to admire about you over the past several years.

I couldn't believe how much of your blog rang true for me. I'm the mom of two teenage diabetic sons, ages 13 and 16. We've been dealing with this for 15 years now. It seems that each stage of their lives brings different challenges. They are both intelligent and responsible young men but sometimes can't explain their neglect of their disease. I'm going to try implementing some of the ideas posted here. Let's all keep on keeping on!

Hi Sandra - Joseph and my daughter are the same age and were dxd around the same time. We hit this wall a few weeks ago and this was our solution. She really wants a facebook page - I really do not want her to have 1. I really want her to work at her Diabetes - she does not want to. So, she proves to me that she can manage this disease more independently and I will give in on the facebook with me as her friend! Celeste

Though, come to think of it-- Joseph told me after he went to camp last summer that of all the guys in his cabin, he was the only one with an A1c in the single digits!

Rich -

You wrote:

"I just know how hard it is to catch yourself and think through the big picture."

Yes, you hit it right on the head-- that was the turning point. It's so easy to let yourself run wild with fear, anger and frustration.

Much harder to stop and step back.

Thank you for sharing your thoughts.

Penny -

Thanks.

And if you want to talk more about what's going on with Riley -- even if you're just looking for someone to listen -- please let me know.

As far as how things are going... much better since we had the talk at the end of this post. Joseph's bgs still move up and down, but nothing like what they were during those awful weeks.

But the best part is that he seems happier now, more free.

Bernard -

Thank you. :-)

Anon -

Good luck! And yes, let's definitely keep on keeping on! :-)

Celeste -

I smiled when I saw this, because I finally broke down this fall and let Joseph get a Facebook account. While I have access to it, I only rarely check it-- though sometimes he calls me over to see a status or photo one of his friends put up.

(Am I the only one who thinks it's funny that all these kids who go to the same school need Facebook to keep in touch? :-)

Anyhow, good luck-- and just keep talking -- and listening -- to her.

Mom of 2 sons -

Thanks.

Shannon -

You too?

Dang.

Brendon is a smart kid. And he's been doing this for a very long time. Maybe it is the same thing.

Joseph didn't want to talk about it either-- especially after he'd not bolused.

Throw the idea out there, see how Brendon reacts...

I won't lie, though. When I made the decision to give him more freedom, I was damn scared that I might be wrong-- that maybe he was just burning out on diabetes care.

I have thought about responding several times...and each time I get a wave of emotion.

I was a child who had diabetes. And I didn't always test (in fact, before my appointments I would make up numbers for my logbook--there was no meter downloading back then. Only chemstrips so I could get away with it), I skipped shots, ate without thinking, etc.

The first day I got my driver's license I drove the car (alone) to the convenience store, bought a candy bar, and sat in the car and ate it. Yes, really.

My first day of college I went to the food service for breakfast and served myself a bowl of frosted flakes with chocolate milk on them. Why? Honestly it wasn't that great. But I did it simply because I could, and no one would think anything was wrong.

It's a crappy disease. I got through my teen years with my mom working with me. We had a great relationship. She trusted me. I wanted to do what was right. But I still made some dumb choices. It's what teens do. With diabetes or without.

You are an amazing mom, and this post is a demonstration of your openness to possibilities and empathy for living with diabetes. Joseph will always know that you are on his team. As an adult he most certainly will look back (as I have after reading your post) and think, "hmmm, why did I do some of the stuff that I did??" And, like me, probably not have a real answer.

I read posts like this and realize once again just how much my mother went through to get me to where I am today, healthy. And these realizations mean an awful lot to me. Thank you.

Having been that teenager - and I mean *that* teenager exactly - I think you've got it right. We test our boundaries when there ARE boundaries to test, particularly when we're at that strange crossroads between child and adult-hood. There will, I'm afraid, be other boundaries tested. But you're right - he's got a great foundation - that you and Ryan have given him and that will make all the difference. It may take some hard lessons in crossing the wrong lines to learn - this sucks, but isn't that how we do a lot of our learning?

I'm struck that Joseph is able to express his feelings about having diabetes so clearly, and that he's able to be open and honest with you about how your reactions strike him - how they make him feel. This is a true testament to the stellar relationship you have. Another something that will make a real difference, I think.

Hope all is well with you - your new job, Evan, and especially with Joseph... :) Give him a hug for me - and tell him I'm looking forward to another ballgame next summer...

Thank you for your candor. While Joseph seems to be thriving since we've given him more freedom, he's still a teenager.

Still human.

It scares me to think of the mistakes, the choices he will likely make that carry the potential to hurt him.

But then, how will he ever trust himself to handle this if we don't trust him?

Nicole -

:-)

Thank you.

We're all doing fine, and the job is going really well. Both kids are loving school (Joseph has actually been referred to as "the mayor of middle school" by his principal).

And yes, I'll certainly pass along that hug. Joseph still loves to give and receive them... another thing he's sort of known for at school.

I will keep you posted on our summer plans... another ballgame sounds lovely. It'll be fun to see the look on your face when you see Joseph -- he's 5' 6" now and still growing. :-)

Oh, Shannon -

I know.

And because Brendon is younger it makes this even more complicated.

With Joseph, I was able to get through to him when I moved away from the symptom (his snacking and not bolusing), and focused instead on what I thought might be the cause -- his frustration over needing permission (even though we almost never denied him) to snack.

While I reminded him that "with great power comes great responsibility," we spent far more time talking about the fact that he was old enough to make these choices on his own.

Now, with Brendon it's stickier because he's younger. I think you need to ask yourself: "Would I let him choose his own snacks and eat them without asking me if he didn't have diabetes?"

And then go from there.

Please keep me posted on how you're doing.

And hey, on the rising A1c - don't forget that Brendon is growing and that too will do a number on blood sugars.

Thanks so much for sharing this; I am pretty much in the same boat with my 12-going-on-20 year old daughter. It's so HARD to let go, and trust that she will do the right thing, all the while knowing that the odds are against her doing the right thing....sigh.... I am grateful for your insight, though, and work towards doing the same thing with her. Big hugs to you!

I saw your link on the CWD weekly email and I just read your post. I too am in tears sitting at my desk, because we went through this EXACT same thing a few months ago.

My 6 year old daughter has had diabetes since she was 3. A few months back we started to notice the same thing - unexplained highs, and the gradual realization that she was sneaking food, and predominantly the glucose tabs from the bottle that we'd kept in her room. I too was incredibly hurt that she was so blatantly lying about it all and that we couldn't get her to see the danger in it.

Well, as was the case in your story, my husband and I realized suddenly that what she was asking for was more independance. She wanted the responsibility to choose food and bolus for it without being asked. She was mostly sneaking food at night, after she had gone to bed, becuase she knew that I would say no to more food.

So we gave her two items in the pantry that she could take at any time as long as she remembered the bolus for them and came to us to show us. Ever since the first night we did this, the problem has completely disappeared. She proudly comes to us every time she has one of her snacks, shows us the bolus calculated and ready to go, and we've had no problems since.

Thank you for sharing this! It's so nice to realize that other people have the same experiences we do.

Timely post, for us. You see, even though we say she eats what other kids eat, has a normal diet, she does not have freedom in her diet. Freedom such as having dinner, having dessert but having another extra dessert.. No. Or eating right before bedtime. Or having not one, but three snacks before dinner. Teens are hungry and like to snack. Everything we have been told by the endo about timing of food and snacks might have to be put on hold for a few years. We may have to relax, let her eat what and when she wants and bolus for it. And not limit her choices. But I also do remove temptation from the home. We always have potato chips and ice cream on hand as well as those 100 calorie snack packs. Regular cookies, cakes, pies, we don't have them here.

Sandra, my son Casey will be 14 in 2 weeks and has had D for 7 years. Since he has had it for more than half of his life, he has been responsible for quite some time. BUT, we noticed in the last year or so that we, too, are banging heads and arguing about "how it sucks so bad to have diabetes". He hates it, we hate it, and there is nothing that we can do about it. Being a teenager is hard enough, let alone being one with D. I agree, it sucks. I feel like I am a failure as a mom at times, but then I think it;s just because we have to be the ones who wear the black hats, the deliverer of bad news, the one who has to lay down the law. Casey plays football and hockey and goes to camp. But he still has that D thing. I'm here crying with you, we'll make it through the teenage years together!

About this Blog

About Me

I'm a mom of two children-- a 9-year old girl and a 16-year old young man. In addition, I've been vice president of a marketing company; a full-time student (English major); a product services manager for a financial publisher; a childbirth instructor and birth assistant; an aspiring sculptor; and most recently, director of information services and outreach for a non-profit government watchdog group-- in exactly that order.